Parenting Isn't Pretty

Monday, May 14, 2018

I wrote here a while back about my twentysomething kids' frustration in trying to find jobs, or more accurately, my frustration over their frustration. I complained about employers who don't seem at all interested in giving young people with even fairly mild disabilities a chance, and said those who did would get me singing their praises instead of shaking my fist.

A little while after that, I put a link to the post on Twitter and cc'd a few business who had particularly broken our hearts.

Two things happened almost immediately after. One of the companies I tagged, Chipotle, expressed concern on Twitter. I wound up having a phone conversation that gave me some faith that if one of my kids interviews at a Chipotle again, we'll have a less frustrating experience. If nothing else, we'll stop cursing when we drive by Chipotles now.

The second thing was that a job kind of fell from the sky.

I can't paint a direct line between my Tweet and the call from Wendy's, but it surely seems serendipitous. Unlike so many past job attempts, an online application led quickly to an interview, an acceptance, and a first day on the job. I probably shouldn't jinx it by writing about it, but ... I did promise to sing praises.

It's also particularly appropriate that this so-much-wished-for job comes from Wendy's, which is at least partially responsible for my kids being my kids. Those signs in Wendy's restaurants for the National Adoption Center got us started thinking "Hey, maybe we could adopt an older kid or two." Though we weren't successful finding a match through that program, the agency who did our home study to submit there ultimately started facilitating adoptions in Russia, and showed us a picture of our daughter, waiting in an orphanage. This kind of feels like a full circle somehow.

But of course, as the job fairy giveth, so does the job fairy taketh away. A job I thought my son had has evaporated. This is not the first time someone has said they're hiring this kid, made us wait, and then never done anything about it. It's not so much that I want to fight for this particular job as I want an explanation of how this happens. So Marriott, I've been tweeting at you, and maybe I'll be lucky twice. Check this space.

Monday, March 26, 2018

“Thank you for pretending to be interested in employing my young adults so that at least for a brief period of time, we had something to be excited about.”

Though of course, when you reply within seconds of an online application being submitted, you’re kind of cheating us of that. Could you, maybe, delay the auto-rejection for at least as long as it took to fill out those online pages and pages?

Let me try again, for the few that led us on at least a little bit.

“Thank you for having sufficient interest in my young adults to call them in for an interview before breaking their hearts with that rejection e-mail.”

Well, now, wait. So few actually bother to deliver a post-interview rejection, favoring the “If we just never contact them again, they'll figure it out eventually” strategy. Remember that time my daughter kept calling and calling and being promised a reply and nothing, nothing, nothing? Good times!

Maybe: “Thank you for giving my young adults practice in interviewing skills, patience, perseverance, and emotional management of rejection.”

Those are lessons I'm not learning so well, obviously. Sure, I give my kids all the “It's not a personal rejection, it has nothing to do with disability, you don't know who else was in the running or exactly what they were looking for. We'll just keep looking, the right place for you is out there, sweetie."

But what I want to write is:

“Thank you, you inconsiderate, small-hearted, closed-minded, short-sighted hiring person, for your contribution to the chipping away of my kids’ self-confidence and self-esteem. Does it take so much vision and imagination to see young adults with disabilities as worthy of a chance and at least as many opportunities to fall short yet stay employed that you'd give to absolutely anybody else? With just a little help up front, you'd get yourself a long-serving, loyal, enthusiastic, grateful employee. And you'd get me singing your praises on my blog instead of shaking my fist.”

Monday, March 19, 2018

I see in the news that Toys R Us will soon be no more. My kids are past the age now where toys are a major purchase item for us, and I'm certainly happy buying online for any incidental plaything purchases I need to make. But the thought of Toys R Us stores closing still touches my heart, because some of the best times I spent with my son when he was young took place at our local Toys R Us.

Some of the cheapest, too.

The visits I'm thinking of weren't about picking big birthday presents or getting major gear for the yard or the bedroom (although we absolutely had those too—don't blame me for the company going under). The ones I remember most fondly revolved around my son picking out a single Matchbox or Hot Wheels car. One tiny automobile.

Honestly, he could scan those spinners looking for Just the Right One for, like, an hour and a half.

And I'd gladly let him. I'd bring a book with me and find an out-of-the-way patch of floor to sit on while he reveled in the many many many options, going back and forth, considering so carefully, delighted to have the freedom of extremely leisurely choice.

Time to indulge his obsessions was not something he got a lot of in those days. Teachers and therapists were generally invested in preventing exactly that. Focusing attention on what other people found important was at the top of the skill goals others had for him. I was often advised that such obsessions were bad for him and something I must work vigorously to curtail.

I didn't tell them about our ninety-minute toy store idylls.

I had come to learn that his obsessions—for little toy cars, certainly, and for keys as well—offered the kind of door into his attention and personality and interest that was otherwise so hard to find. I was sure not going to slam it. While our Toys R Us car-search visits weren't what some parents would call "together time," since we weren't actually interacting, these moments of peaceful co-existence were a nice oasis in an often stressful time in our lives.

Mom got a little respite with her book. Boy got time to focus on something that interested him. And in the end, I bought a 99-cent car and we headed home. Lots of value for that 99 cents.

I'm grateful for Toys R Us for allowing us the space and tolerance to just let a boy endlessly shop and look and love and appreciate and make whatever calculations were going on in his head. And let a mom just hang without hurrying him. It was a safe and peaceful space, and one we needed. RIP, old store. You'll live in my memory.

Sunday, December 10, 2017

You have to understand
that nothing good comes after the words
“You have to understand,”
only a slap of somebody’s idea of reality
that you are woefully ignorant of
and must be made to comprehend.

You have to understand
that your child is limited
and resources are limited
and options are limited
and the system’s ability to do anything
other than what the system has always done
is limited
and tolerance for parents
who refuse to understand that
is limited too.

You have to understand
that the experts know everything
and you know nothing
and should sign the papers
and say thank you.

You have to understand
that you can only ask for appropriate, not best,
because best is not for children like yours
or parents like you.

You have to understand
what sitting in a room with strangers
and hearing your child reduced to numbers,
bad numbers,
hopeless numbers,
year after year after year
can do to a parent.

You have to understand
the way we are weaponized
by the endless well-meaning negativity
and that fighting is the only alternative to fear,
hassling to hopelessness,
adversariness to abdication,
strength to weakness.

You have to understand
that we can’t not advocate,
we can’t not react with anger and doubt and suspicion,
we can’t not take it personally,
we can’t not make it our issue,
our identity.

You have to understand
how it follows us home from school--
the defensiveness, the readiness to assume the worst,
the understanding that everything imperfect
is ours to find a fix for.
Mama Bears can’t hibernate.

You have to understand
how habits formed when our children are young,
instincts sharpened, reflexes honed,
live on well past their usefulness.
When we’re long-forgotten by the educators
who said those things that still burn in our brains,
who started those files that consumed our lives,
who made those judgments we still press against,
who set us on our road of second-guessing
every last decision and triumph and certainty,
we remember everything.

You have to understand
how advocacy denies us acceptance,
and appropriate will never seem best
ever, anywhere, even when maybe it is,
who knows?
We will not recognize it.
We will never let our guard down.
We will never quite trust.
We will never really relax.
We will never understand.

Monday, March 06, 2017

Back when my son was in school, and after lockdown drills became a thing, I remember getting notes complaining that he was not behaving with appropriate quiet stillness and asking that I talk to him about the seriousness of the drill and the need for everyone to practice laying low and praying not to get shot. And I appreciate the stressful situation school personnel are in. I'm sure they're freaked out by the implications of lockdown drills themselves. A kid talking and making noise and moving around and being disruptive could be a life-and-death issue. I get it.

But none of that changes the fact that disabilities don't come with an emergency off switch. If a student has a diagnosed disability that impairs the ability to sit still and be quiet — and that makes regulation in times of stress even less likely — that disability is still going to be present and still going to require support and accommodation no matter how many memos you put out stating the lockdown rules and how many notes you send home.

I've been looking around for a while for information on how exactly schools are supposed to manage this kind of challenge and didn't find much in the way of information. Finally, I saw an article from the journal Teaching Exceptional Children titled “Supporting Students With Disabilities During School Crises: A Teacher’s Guide,” written by two special-education professors who also have kids with disabilities and also wondered, “Why isn't anyone creating resources to handle this really obvious problem that is not going to go away no matter how much you may wish it so?”

Note that this is not just about kids with behavioral or sensory issues. Think about what happens when your kid is locked down in one room and the insulin she's scheduled to get right now is in another. Think about how your kid who has to be moved from a wheelchair to a chair and back is going to be evacuated quickly. If your child has a seizure or an allergic reaction at the worst possible time, would the staff they happen to be with know what to do?

No one knows when a real disaster is going to happen or how anyone will react when it does. But schools think it's important enough to practice and practice and practice for it. Those practices alone can be a disaster for kids with disabilities, if they don't include rehearsal for the accommodations that are their legitimate need and right. If your school's not on top of that, print out the two articles linked above, schedule an IEP meeting, and get some balls rolling.

Wednesday, January 18, 2017

[The recent Supreme Court case involving what constitutes a free and appropriate public education has brought this old post to my mind again. Imagine the court cases that would ensue if every parent had to deal with what parents of kids with special education experience constantly!]
One of my favorite items on my list of reasons to go to back-to-school night is the opportunity to listen to an administrator give an ambitious, promise-heavy speech about what a productive year it’s going to be, how much the school believes in the kids, how much potential the students have, and how the school is going to do everything to help each student perform to the peak of his or her ability. Not something you hear around your average IEP table, where we’re programmed to expect “appropriate” instead of “best,” modest progress toward measurable goals instead of grand achievements, and outcomes weighted with a heavy dose of reality.

What if the principal got up and gave that kind of speech at back-to-school night? It might sound something like this:

Assembled parents.

This speech may be a little hard for you to understand, because I and the large team of professionals behind me on this stage know all about education and you know so little, but I’ll try to talk in terms you will understand.

This school year, the teachers and staff will be dedicating themselves to giving your children the absolutely most appropriate education for their particular abilities. We have assessed each of your children, and frankly, most of them are never going to amount to anything. They’re going to wind up living in your basement and working fast-food. We’ll give them the education they’ll need to work a cash register or a mop, and save you the money you’d throw away trying to get them through five or six years of college they’ll never use. We’re realists here. We’re not legally required to deal in dreams.

Since it is our strong and considered belief that kids do best when they are educated with kids exactly like them, without anyone who deviates from their perceived potential for achievement to weigh them down, we’ve placed your children on a number of educational tracks, from gifted to reasonably bright to average to below average to barely hanging on to here because the law requires it. Your child will be spending the majority of his or her school day, including lunch and recess, with children on his or her precisely and professionally selected track. Perhaps we’ll let them mingle at gym. If the state insists.

Our school has state-of-the-art technology and classrooms carefully designed to maximize learning, and those of you who have children who have been assessed as having the potential to grow up to become taxpayers and politicians will certainly enjoy seeing those tonight. For the rest of you, we’ve cobbled together a collection of dark corners, library tables, converted closets, and windowless rooms in which to educate your children. It’s not like you need a SmartBoard to learn how to say, “Do you want fries with that?” We’re all about what’s appropriate, and what could be a more appropriate classroom for a future food-service employee than a table in the cafeteria? You’re welcome.

We hope you will appreciate the tremendous effort we have put into determining just how much effort your child deserves, and that you will celebrate with us the stone-cold appropriateness of all the educational opportunities you witness tonight. Just to be sure, we have some legal paperwork for you to sign on the way out of the auditorium signifying your approval of whatever the heck we decide that appropriateness entails. Please note that attorneys for the school district will be stationed in the lobby by the bake-sale table to quash any complaints.

Friday, October 07, 2016

So we’ve now got three weeks of ABC’s Speechless to judge from, and I’m still loving it pretty hard. It’s fulfilling my hopes that it would be both in-jokingly true to the experience of raising kids with special needs and flat-out funny by anyone’s sitcom standards. I’m happy that J.J. is allowed to be an actual teenager, with teenage-boy interests and concerns, and that his mom sometimes makes mistakes that are all too recognizable to me.

There are some roads the show has chosen not to go down — by making a big point of the fact that J.J. is NOT in special ed, oh no no no, and having the principal and staff be hyper-cooperative rather than actively obstructionist. This means I will not get my dream of watching Mama Bear Maya take apart an IEP team (she could still be an advocate for a friend at an IEP meeting, right? right?) or fight an administration that doesn’t want any part of inclusion or her kid at all. That might not be so funny, I get it. I’ve been there, and it’s not funny at all. But I bet there are parents who were wishing they could jot down some script-written zingers for future use.

Fortunately, there are plenty of high-pressure special-needs-related situations still available for Maya to be righteously indignant at, and I look forward to watching her scorch some earth dealing with the following:

An insurance company denying a claim.

A doctor’s office keeping her and J.J. waiting for a couple of hours.

A doctor acting like a know-it-all.

Extended family members who snipe and second-guess.

Gatekeepers who stand between her and equipment J.J. needs.

Speech therapists who have opinions about J.J.’s communication options.

A random visit from Child Protective Services.

Employers who refuse to give J.J. a summer job.

Online commenters.

Crushing doubt and guilt that maybe every decision she’s ever made for her son has been wrong, driving her to hide in her room weeping while her family tiptoes lightly around.

Wait, maybe #10’s not that funny? I was hoping Speechless could find a way to make me laugh about it. What would you add to this list?

Expand Your Advocacy

50 Ways to Support Your Child's Special Education looks at all those things you can do outside of those annual IEP meetings to promote success -- from getting a better start in the morning to helping with homework to communicating with the school. Parents have the power to make a difference, and I've got some great ideas on how to do that. Ask for the book at your local bookstore, or buy it online from Amazon or Barnes & Noble.